Newly Diagnosed and Multiple Chronic Illnesses

    • February 18, 2017 at 1:45 am

      Hi, Im Emet, I’m 22 years old and have been diagnosed with CDIP for only a month. I was supposed to start IVIG next week but like many of you my insurance denied my claim and is making me go through more testing to prove i have CDIP.

      I have already been diagnosed with Ehlers Danlos Syndrome, Dysautonomia, Cervical Instability, and Gastroparesis along with some other minor diagnosis like anxiety and insomnia. I cannot eat by mouth and use a feeding tube. I have significant muscle weakness as well as tingling, numbness, and frequent dislocations.

      Anyone else have other chronic illnesses?

    • February 18, 2017 at 2:14 pm

      Emet, All,
      I know somewhat of how you feel with multiple diagnoses! I am diagnosed with Type 2 diabetes (for 12 years now), “smoldering” (30% bone marrow) multiple myeloma, amyloidosis (still no “type” identified) & recently, CIDP. I have asked NUMEROUS Drs. the question: is one of the CHRONIC diseases driving, or causing, the other diseases? Are they all tied together as auto-immune diseases? All I get as a reply is “possibly”. I wish you the very best, & a speedy recovery! Kevin-

    • February 19, 2017 at 1:14 pm

      Hi, I have nothing new diagnosed other than asthma*. Right around the time I started having the numbness/tingling of GBS (way before diagnosis), I started having digestion problems and skin allergies. (I say asthma like it’s an afterthought, not a big deal! Barely 2 weeks ago, I had a severe reaction to peanut oil used in a food sample at the grocery store. I hadn’t brought my inhaler with, but the coffee shop next door gave me a cup of ice to help…) Since diagnosis, I was put on an antidepressant that has made me overweight. Cancer in menopausal women runs in my family, so I am trying to get as healthy as I can before I get there. Have always had insomnia. *Oops…borderline high blood pressure is new also. It was pretty high for a while, but is getting better with some exercise and no potato chips…and trying to relax.
      I hope this helps in any way.

    • March 12, 2017 at 1:05 pm

      I’m in your camp. First I was diagnosed with common variable immune deficiency though I don’t get any sicker than my family. I have delayed gastric emptying and bile reflux which is wholly unpleasant. In 2013 I had my gallbladder taken out due to ductal stones and since then my liver function studies have increasingly gotten worse. Biopsy suggested drug induced but doc “never bought into that theory”. I see a hepatologist in April rather than my gastro. Then ALL the crazy stuff associated with CIPD, like foot drop and what they thought was brachial neuritis. Going to any new doc is a nightmare with all this isn’t it? Last summer I had terrible eye problems which the university docs could not figure out with corneal edema alternating between eyes. Finally had biopsy of eye fluid (wild experience) which showed herpes simplex. Seems every time I come up with something new, it present so atypical my docs are stumped. THE CIPD neurologist had run the blood tests which showed the elevated liver enzymes (6 months after gallbladder removal). He said it was highly unlikely to have several serious medical conditions that are not related. I’ve always remembered his words.